My Tarlov Cyst Disease Journey: Surgery Week!
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- Опубликовано: 21 окт 2024
- #tarlovcystdisease #invisibleillness #raredisease
Since getting the diagnosis of Tarlov Cyst Disease, this is the moment that has been looming over my head - surgery week. I know how scared and curious I've been leading up to this, that I thought I'd take you along to help better understand what surgery is like. For those going through this, I hope this provides some insight and a bit of hope too. No two experiences are alike, I completely understand this, but here is just my perspective. It is scary, but it's important to go into this with a positive mindset! YOU CAN DO THIS!
More about Dr. Feigenbaum: www.frankfeige...
More about Tarlov Cyst Disease: www.tarlovcyst...
Just because I mentioned it and am not above the shameless plug, more about my children's books: greencloverboo...
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Love to hear this! You look great for just having surgery!
So helpful, honest and informative. Thank you. I hope you continue to heal well. 🙏💐
I am just at the beginning of my journey...
Glad you're on the mend
You gave me hope! Years with ciática and now I have the diagnostic.
I was wondering what kind of health insurance you have that covered it out of state but Dr. FEIGENBAUM is still in network with .
Hi Katie, thank you for sharing your story. I have surgery next week and I'm very nervous, but ready to get on with it, like you were. We fly to Dallas tomorrow. I hope I have a good experience like it sounds like you had!
Ohhh, how are you doing today?
Thank you for making this! So helpful for all of our warriors preparing for surgery or curious about it. 💜
The unknowns are just so scary, so hopefully this is insightful for those going through this like us!
I’m having surgery day after Christmas and your video makes me feel better about it 😊 thank you
How are you doing now that you're a couple weeks into recovery?
Any updates ?
I know it takes a lot of courage to take this step. Thanks for sharing, this spreads hope. Love your positive attitude. Glad that you are on the path of recovery, more power to you!
Thank you. Hope is exactly what I want to be able to provide to others feeling scared and worried because of this diagnosis. ❤
Congrats for the courage!!! You will be great!!!
Dr. Frank, what did you do with the cyst leak during the operation?
Love the detail.
Thank you very much for your helpful video! My surgery is rapidly approaching. It is in 3 weeks. I am feeling apprehensive. I have already endured 4 previous 4 surgeries. Thank you for the step by step recovery notes. I found tem very helpful. I hope your recovery has come along very nicely. Blessings to you.
Any updates ? How did your surgery go ?
Hi Katie how are you doing now ? I go for consulting in June 2023 to Dr. FEIGENBAUM.
Great videos you are making, I recently had surgery on 9/7/22. You give great tips that has helped me during my Tarlov Cyst journey. I had 9 Tarlov cyst the biggest was on the sac that holds all the nerves on the sacrum. I had 4 cysts that were stuck together and 4 individual cysts on the S1. I had been dealing with chronic pain for the past 2 years before being diagnosed.
Thank you!!
Any updates ? How's the pain is it better ?
Katie, have you earlier videos about your first interactions with Dr F? My spouse has an consolation in-person appointment with him very soon and her daily symptoms are terrible.
Hi Larry! I don't have any interactions with him on video. My consult was done over the phone and I didn't film when I was in my appointment with him the day before surgery. Is she meeting with him in person or via phone consult?
Hi again Larry - I just reread your comment and realized you did say in-person! I felt so much better after my in-person meeting with him the day before surgery. He answered all of my questions, showed me everything on my MRI and really eased all of my worries. I hope she has the same experience and that the appointment helps her as she makes decisions regarding her treatments.
I talked to Dr. Frank Friday 24. I am having the surgery I am just waiting for insurance
I am going to have tarlov cyst surgery on my sacrum in May. I have to go by myself because I don't have anyone to go with me. If you have any suggestions on how to make this easier going alone. I would love to hear them. Your videos have been very helpful.
Any updates how did it go ?
Hello
Do you think my insurance covers the surgery, if I live in san antonio ?
Hello! I honestly have no idea. It really just depends on your insurance, but if you schedule a consult, the surgeon's office should provide you with that info. I know it took a few rounds of conversations to get my insurance to approve, but Dr. F's office took care of all of that. I do recommend you get a case manager from your insurance to handle your claim/case so you have just one person to deal with.
Hi!
I just had my Tarlov Cyst surgery last week on Th and was discharged yesterday. I just had few questions for you; obviously I have some pain in lower back/sacram(sp) area and my left side (leg) is aching a bit with some numbness, did you experience that? How long did it last? What ice machine are you referring to? I just have ice packs at home. Any tips to recover maybe a bit faster? Thanks, Manny
How are you now
Do you recommend me to do the surgery
Any updates ?
@@thurayaalhassani6383
It’s up
To you! Frankly, not sure if the surgery helped me or not. I was told to give it more time. :(
@@jackattack9799 updates on?
Any updates madam? Pls..
What were your symptoms before surgery? I am so happy for your a bit jealous that you are on the other side.
Oh, I talked about that in some of the other videos in this playlist, but most symptoms were aches and pains in my sacrum area, hip and up through my pelvis, all just on my left side only. Apparently, that's where thr largest cyst was and the ones doing the most compression and damage.
Same for me!!! I guess I'll need to through surgery
Hi does spine anesthesia could cause Tarlov Cyst to grow or worsen? Should I avoid Spine Anesthesia?
Thank you for sharing. How are you doing with daily activities standing or sitting and any type of exercise?
I'm 8 months post-op now and standing, sitting, walking are all just fine. I even ran a 5k, but had to back off on some of that since because I was starting to feel a flare up. I haven't gotten back go full working out, still just listening to my body and doing what I can, but I'm back to being much more active now and feeling pretty good overall!
I work in an office and live in a big city that requires a lot of driving. Sitting for extended periods is a must. I am wondering hire long it would be before getting back to work…? How long was it before you could sit for long periods of time? Or stand for hours?
@@silverabec12 well, that's a tough question because every BODY is different and everybody's journey is different so its hard to compare. I did go back to work though after 8 weeks. My job wasn't physical at that gime though (my off season) and I had flexibility to work from home as needed too. I could sit longer than some prior to surgery though too.
How much does the surgery cost , please ?
Oh, that's a hard question as I think that will all be dependent on insurance. Dr. F was considered in-network but out of state for my insurance so much of the surgery was covered for me, luckily.